We don’t like bad news. No one does. Maybe that’s why people look the other way when they notice symptoms that their health might be failing. Don’t we all know of people who have waited months to get a lump checked or tried to self-medicate serious health concerns that need treatment and even surgery? The same is true when it comes to Alzheimer’s and Dementia.

The Alzheimer Society of Canada states:

“Last year, the Alzheimer Society asked Canadians how long they waited before seeing a doctor when their family member had signs of dementia. Nearly half said they waited a year or more! Why? They believed the symptoms:

Would go away

Were the signs of “old age”

Were episodic or not to be taken seriously

Needed to get worse before seeing a doctor.

Three quarters wished they’d known earlier. An early diagnosis means:

Medications to treat symptoms

Time to put legal and financial affairs in order

Keeping the person with dementia at home longer

Involving the person with dementia in planning future care

Understanding how to respond to the disease symptoms.”

In our case, there wasn’t years, there was only weeks to grasp the new reality that was facing us, but still I often wonder if we had watched a little closer, been more aware and had more information about our options ahead of time, if the experience wouldn’t have been so traumatic.

Last night I had the privilege of sharing about this very topic with our mayor and town council. I’ll share with you what I shared with them:

“Hello, my name is Sharon Osvald. Thank you for allowing me to come and share tonight about my experiences with Alzheimer’s and Dementia.

A little over a year ago, our family was blindsided, when my mother very suddenly began showing signs of dementia, as well as delirium and severe paranoia. Within a matter of a few weeks, the mom we knew and loved- just slipped away into a different person.

Despite having worked with seniors in nursing homes and other social services, I was completely unprepared and uniformed about Alzheimer’s, dementia and elder health care services.

This year the Alzheimer’s Society is promoting the importance of early detection of Alzheimer’s. When we look back with a more discerning eye, we DO see some signs of changes in my mom – not following conversations, changes in her attention, self-care and other subtle changes. Because no one else in our family had ever had Alzheimer’s and she was already over 80, we just assumed Mom would never get this. It didn’t even cross our minds.

Author, Bart Mindszenthy says: When it comes to Alzheimer’s, parents live in a state of “denial” and adult children “ in a state of avoidance”. In our shock, my siblings and I wasted valuable time denying the obvious and then having to search for resources- but not knowing what to look for or where to look. Myths and misinformation about nursing homes and aging was a distraction. Knowing what we know now wouldn’t have changed the fact that my Mom would need long-term care, but it would have made the road there a lot less ugly!

Alzheimer’s is a topic many of us want to think about. It’s negative, But, “We’ll cross that bridge when we come to it” thinking makes the journey that much more difficult for our families and community. We need to be informed and aware.

Think of how this affects our community. Just last week at the gas station, I watched an older man pacing outside his car, frustrated with having to wait while the car in front of him paid. My first response was, – what most of our’s would be- “what a jerk!” – but, then I recognized him and realized this man suffered from Alzheimer’s…and instead of annoyed, I felt compassion.

Think of that older neighbour who walks too close to your house (he used to be a teacher) or the neighbour who throws his garbage over your fence, maybe he’s battling with this disease. What if we as community responded with grace and information ? We’d be a better community.

Being open to these early signs of Alzheimer’s in our families and communities is important. Let’s help each other.”

January is Alzheimer’s Awareness month. I feel especially attached to this date because our Alzheimer’s journey began around this time last year.

Last year at this time I wrote an article about Alzheimer’s for our local newspapers. At the time we were in the thick of my mother’s dementia and delirium. We were uninformed and frightened. I felt like my mother had died – literally.

A year has passed and although her circumstances are still difficult and far from what we had ever hoped for her, I’ve begun to see that we haven’t totally lost our mom – we just have to look harder to find her.

This Boxing Day we got to experience one of those moments. Mom was well enough to come and have a meal with us. The last time that happened was the day we took her to the hospital, over a year ago. As long as Mom is still with us we will continue to seek out these sacred moments and cherish them for the miracle they are.

So in light of Alzheimer’s Awareness month, I am going to share the Alzheimer’s column that was published last year and the one that will be published this year. Where ever you are in your caregiving journey, I hope you are encouraged.

Last Year:

By: Sharon Osvald Originally Published in the Northumberland News and The Brighton Independent January 20, 2011

Sometime during the Christmas holidays I lost my mother.

Looking back I’m not really sure when I lost her. If truth be told, it started in tiny ways a long time ago, but it wasn’t until September that the signs became impossible to ignore.

The witty, extroverted, spiritual woman I’ve leaned on and looked to for support and friendship still exists in body, but her mind and personality are gone. In their place is an angry, frightened, paranoid stranger who can’t carry on a conversation and wants nothing to do with the people around her. While her long-term memory for people and details is still amazingly clear she can’t read a book, sit to watch her favourite television program or remember how to work the hot- and cold-water tap.

Dementia we call it, although it is so new to us that we don’t actually know the cause or have an accurate diagnosis. We just keep hoping and praying this fog will lift and it will all be some kind of terrible mistake – a simple medication mix up or result of grief and loss.

For a short time on Dec. 31 the fog lifted. She talked with us, joked reminisced and laughed. She hugged and kissed us, patted nurses on the back and told us how great it felt to finally be having a good day. Our hope soared. But when we left that day she looked me in the eye and with a frightening sense of clarity, told me she might not wake up this way tomorrow.

That was the last good day she has had so far. I have not been able to find that mom since.

Anyone who meets this new mom of mine now will probably not like her. She is unfriendly and does embarrassing things. She is not the welcoming former elementary school teacher and public speaker who used to preach and lead Bible studies and children’s programs.

I lost my mother during the Christmas holidays, but there will be no funeral. There will be no glowing eulogy or talk of happy memories as we release this beautiful 81 year old and celebrate a life well spent. Instead we mourn a little every day and say goodbye minute by minute while we watch her fade into a stranger.

January is Alzheimer’s month.

I am thankful a time has been set aside to shine a little light on the people that live in this darkness and their families. Special thanks to the caregivers, without whom we would be completely lost.

One Year Later: By: Sharon Osvald Published January 2012

January is Alzheimer’s Awareness Month. I have learned a lot about Alzheimer’s and related dementias since this time last year. In fact, a year ago I submitted a guest column to this paper sharing how I had lost my mother to Alzheimer’s disease.

I have experienced much since I submitted that column and have often felt the need to write a retraction of sorts. As it turned out, despite the loss, the grief and the changes to my mother’s personality and understanding, I did not lose her. Not yet. I learned she is still very much “here”.

I just need to look harder now.

I learned Alzheimer’s is a terrible disease. It slowly robs us layer by layer of the person we know and love. It often leaves them tormented, paranoid, afraid and unpredictable. There have been many ugly moments this past year. But, I have learned something else too. I have grown to admire and appreciate the amazing caregivers that exist in our area and the magnitude of the jobs they do. The love and care I witnessed while Mom was at the Trenton Memorial Hospital, Applefest Lodge and her current home, Maplewood is second to none! I’ve grown to recognize the value of our local Alzheimer’s Society and what they do for our community. I have met brave and encouraging spouses and children whose hearts are breaking – but still they visit and care for their loved ones faithfully. I’ve also been privileged to write about my journey at www.mymotherscaregiver.com and find a whole community of like-minded people.

Through all of this, I have learned to enjoy the good moments. You know the moments I am talking about. The days your loved one is well, lucid, funny and “in the moment”. Conversations are intimate and clear. You feel a sense of sacredness like you’re experiencing a little miracle and this might be the last time they are this good. This Boxing Day for the first time in over a year Mom was well enough to come to our home for a meal. It was a short but wonderful gift I am so thankful for. I resolve this New Year to enjoy these moments for what they are without pining for them on the days that aren’t good.

I’ve also learned to live without regret (ok, most of the time). Looking back at “What if?” and “What could have been?” is an exhausting and pointless exercise. I resolve to concentrate on what I can do and let go of the rest. I also resolve to share the burden- not just mine- but others who are carrying the weight of this disease. Helping each other just makes the load lighter.

The day may come when she doesn’t remember me and those little nuggets of sharing and knowing will be gone; it will break my heart. But even then, I will try to find “her” in a smile, a hug or the twinkle in her eye. After all she’s my mother.